363 Days tonight ago I remember so vividly having a hurricane exploding inside of me.

Two days prior to Cochlear Implant Surgery. Tomorrow, a day before, we enjoyed a lovely journey at the beach.

…a whirlwind of emotions, that led to and paved the way to life as we now know it.

Research Articles were read and continued to be read until my eyeballs can no longer remain open. In fact I’d often chuckle & still do, recognizing your desire to now hold your own eyelids open with those pretty little index fingers. At least we try as a team to make those pretty little nails an eyelid holding colored accessory.

My eyelids held open to learn every little bit of information I could/ can to help you during this lifelong journey. Your eyelids held open to begin your journey into the hearing world. So clear to me now, your effort is to hear every second you can physically keep those little eyes awake.

A year ago on August 30th, we drove to Boston listening to nursery rhymes as I tried to ignore the pangs of anguish and nervousness in every particle of my existence. We sat together in your striped sundress and perfectly neat bun dressed in a bow, as if it comforted me to know your gorgeous curly hair, so perfectly placed in a bun would survive the head shaving and trauma of surgery.

The lifelong risks and daily worries will forever be our reality in hopes your evident desire to hear and speak would one day comfort me. Making that decision for you, my sweet Valentina, was the most difficult decision. I knew what hearing you had in your left ear would most likely be taken away following surgery. I alone had to decifer whether or not that decision was worth your chance at hearing sound, accessing sound you needed in order to be able to speak.

There were no guarantees your face would not have paralysis, your brain would not bleed and the fluid that was expected to gush may not be packed quickly enough. We will forever be on alert for a cold and development of an ear infection as this could lead to meningitis as well as an indication of an infection of the implant, requiring surgical extraction. That would lead to you being completely deaf, slowly diminishing the progress you’ve made since activation last September, 11 months ago.

There were and are no guarantees the implant would simulate sound on all the electrode arrays surgically placed within your cochlear in an attempt to artificially stimulate sound.

We arrived in Boston at 8am and in some way we both knew life was changing. At noon time in suited up and carried your into the surgery room. It was then I saw the team of what seemed like an army preparing to work on you. My tiny peanut 2.5yr old. My eyes wandered to all the monitors and screens that were turned on in preparation. The silver operating table did me in.

There we sat, you on my lap, with nurses explaining my job in putting you to sleep. There was a moment in time I wanted to grab you and say I changed my mind. The thought of knowing what was about to be done was almost too much for me to bear.

You fought me as I held the mask over your face for what seemed like an eternity. It took 3 nurses to restrain you as I held back tears. Eventually, you laid lifeless and I laid you on the silver table. I kissed your forehead and looked as many people in that room in the eyes begging for thev reassurance they would operate on you as if you were their daughter.

As I left, I thought I’d break down and perhaps I may have had I had someone else there. Perhaps that’s a way I cope to prevent breaking down. If I don’t see worry or panic in others eyes, I gain strength for you. That’s what you needed.

From there, I spoke with the nurses station who told me you’d be in there 4-6hrs and the first update I’d recieve would be an hr to 2 following the incision behind your ear. I was told I would receive a phone call.

There are many more details, better left unsaid.

I initially updated family and friends in a group message, wrote in my journal to you. Then, I decided to walk and explore Boston a bit. Was never the best at sitting and pondering and wallowing in worry. Never seems to fix much.

An hr turned into two. Finally a nurse told me your incision went well, your mastoid bone had been drilled and you had gushed a bit, but Dr Licameli had packed it as quickly as possible.

In hindsight I thought I may vomit. My daughter’s head, gushing. I can’t even handle an ounce of blood. I wondered if you’d lose memory, or ability to smile. I wondered if your personality would change or if you’d be ok. I wondered many rational and perhaps irrational thoughts.

An hr later I was told surgery was progressing. I remember wondering what that meant? Why is it taking so long?

Around 5pm I was taken into a room with the surgeon a nurse and an audiologist. Finally. Finally, the surgeon smiled and said the surgery went as best as could be expected. He admitted to some fluid leakage/ gushing which makes my heart twinge to this day. He assured me you would be ok. Then, the audiologist told me before stitching you, all electrodes were tested and your ear responded to sound on each and every one! It was then, my sweet darling, I cried. Pretty sure I asked a hundred times through my sobbing if they were sure.

I then had to wait another 90 minutes before you woke up. Almost 7pm. That was the longest 7hrs of my life. Minus labor/ childbirth. Actually. Much worse.

The hours and night that followed was like a horror show, one I think best not to put into words. The kindest description of that night was the ability to hold you and rock you in my arms the way I did when you were an infant. You battled every nurse. ” ROCKY VALBOWA” was the nickname the nurses gave you upon discharge. My little fighter. It was then I realized how amazingly kick ass and strong you are. Stronger than I’ll ever be. You will far exceed greatness.

This year (16mo post diagnosis) has felt like the twilight zone. But here we stand 363 days later awaiting the anniversary if your surgery date. Awaiting the anniversary of your activation date and hearing birthday 9/20/18.

10 words to full blown sentences.

A million appointments, malfunctions, infections, stressors…

And a million more blessings and milestones.

You, my dear, are admired so greatly by your mommy. We’ve become quite the team. You are as much as the pea under my mattress as you are the rainbow in our sky.

So proud to be your mommy.

One yr down 80 to go. 🤟🤷‍♀️🙌💛😘🤗🤣👌🧜‍♀️🧜‍♀️🤱👩‍👧

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Published by resilientmom1113

Have you ever wondered what it may be like to one day be told your child can not hear you?...They can not hear you tell them you love them. They have not heard you sing them lullabyes into the wee hours of the night. They have not heard all of the times you rocked them to sleep and talked to them... Telling them all the hopes and dreams you have for them. Hearing loss, deafness, does not define my child, however it does shape the way we needed to adapt to our new reality.
Parenting children in general is an experience with challenges unique to each of us. Parenting single also ranks into something difficult to describe or relate to unless you have experienced such. But, learning how to be strong for our children is universal.
My child and I have a journey set forth that we have began to embrace. One that has led us into the lives of amazing and supportive providers, new friends and cheerleaders. There are times I wish I could describe what all of this feels like, however words really aren't possible in expressing. If you have experienced this, I am certain our eyes could meet and we would immediately share our story by a simple glance, without a single word spoken.
That is power in itself.
Here we unite.
My hope is to build this site as my daughter and I grow along this journey. Something we can look back upon and read together and a place to hold knowledge, wisdom, thoughts and memories. A place to give and receive advice and feedback.
To connect with other moms and families and to share in the value of knowing we are not alone. To share the resources we learn along the way.
To share a good laugh and to share in conversation with all parents about the realities of being parents. There isn't a handbook, however I am fairly certain, with our heads together we can create a pretty darn good guide. So, join us and we will join you.
View all posts by resilientmom1113

2 thoughts on “One Year Post Surgery (16mo post diagnosis)”

On Wed, Aug 28, 2019, 11:01 PM Through Rose Colored Glasses and Bionic Ears: A Mom and Daughter’s Journey on a Road Less Traveled wrote:

> resilientmom1113 posted: “My Sweet Valentina, Tonight I sit in reflection. > Three Hundred Sixty Three. 363 Days tonight ago I remember so vividly > having a hurricane exploding inside of me. Two days prior to Cochlear > Implant Surgery. This followed 4 months of a whirlwind of emo” >

Helpful Links/Resources

Have you ever wondered what it may be like to one day be told your child can not hear you?...They can not hear you tell them you love them. They have not heard you sing them lullabyes into the wee hours of the night. They have not heard all of the times you rocked them to sleep and talked to them... Telling them all the hopes and dreams you have for them. Hearing loss, deafness, does not define my child, however it does shape the way we needed to adapt to our new reality.
Parenting children in general is an experience with challenges unique to each of us. Parenting single also ranks into something difficult to describe or relate to unless you have experienced such. But, learning how to be strong for our children is universal.
My child and I have a journey set forth that we have began to embrace. One that has led us into the lives of amazing and supportive providers, new friends and cheerleaders. There are times I wish I could describe what all of this feels like, however words really aren't possible in expressing. If you have experienced this, I am certain our eyes could meet and we would immediately share our story by a simple glance, without a single word spoken.
That is power in itself.
Here we unite.
My hope is to build this site as my daughter and I grow along this journey. Something we can look back upon and read together and a place to hold knowledge, wisdom, thoughts and memories. A place to give and receive advice and feedback.
To connect with other moms and families and to share in the value of knowing we are not alone. To share the resources we learn along the way.
To share a good laugh and to share in conversation with all parents about the realities of being parents. There isn't a handbook, however I am fairly certain, with our heads together we can create a pretty darn good guide. So, join us and we will join you.